Providing quality end-of-life: the stakeholder perspective

By Joshua Bird (Editor)

Since moving to Scotland, I have become increasingly interested in participative policymaking processes. In contrast to more traditional ‘top-down’ methods, wherein elected representatives develop and implement policy in largely insular fashion, participative policymaking offers relevant stakeholders a ‘seat at the table’. Given that these stakeholders deal with issues on the ground, I have found that engaging with them is an excellent way to produce more robust policy outcomes. The Scottish Government has repeatedly endorsed the movement toward more participation and inclusion through various means such as the Community Empowerment (Scotland) Act, participatory budgeting, and others.

My role as a policy researcher at Holyrood Communications recently offered the opportunity to engage in participative policymaking at an event on End-of-Life Care. This event provided a forum for physicians, nurses, council members, third sector professionals, academics, and other key stakeholders to discuss how to ensure that Scots continue receiving quality end-of-life and palliative care.

As a bit of background, end-of-life (EoL) care is becoming a key policy priority for the Scottish Government. The Strategic Framework for Action on Palliative and End of Life Care was published in December 2015, and a recent report from the Scottish Parliament’s Health and Sport Committee found that while Scotland is providing adequate EoL and palliative care, it could be doing more to ensure that data about the quality and availability of this care is more robust. In addition, the fact that the population is ageing rapidly requires additional work to ensure that people at the end of their lives have access to quality health and social care.

After a series of plenary presentations and panel discussions, I facilitated an ‘Open Space’ session during the last part of the day, which took advantage of the collective knowledge and expertise of all the delegates in attendance. Using a series of flipcharts, they identified four key issues facing the delivery of adequate and appropriate EoL care, and then collaborated with one another to develop ways to begin overcoming these issues.

1. Identifying appropriate care

A key area for improvement is identifying when EoL and palliative care are necessary, and a significant impediment to this is that there is no set definition of either (WHO, the Scottish Government, and Scottish Partnership for Palliative Care, for example all have slightly differing criteria).

These differences have important consequences. First, they may result in misinformation about what EoL and palliative care actually entail, and this my subsequently lead to incorrect perceptions of the usefulness or effectiveness of this care. It may also create confusion around ‘generalist’ versus ‘specialist’ palliative care for the same reason. Finally, there is often a lack of trigger identifiers for the provision of palliative care, and the absence of single definition may further complicate this.

To combat these issues, delegates called for everyone who suffers from a chronic illness to have an anticipatory care plan (ACP). ACPs must include pertinent information regarding universal dying wishes, resuscitation measures, organ donation, desired place of death, etc. Another important solution would be to streamline data by creating a single patient record, an idea that delegates repeatedly mentioned throughout the session. Delegates likewise saw the lack of self-referral pathways as a major shortcoming in current legislation, and called for this to be rectified as soon as possible.

2. Resource challenges                                

In these austere times, resource constraints are perhaps the most significant hurdle in delivering adequate end-of-life care. While funding is important, there are also other factors at play. Delegates thus cited three key areas where shortfalls hurt most:

  • Finance: The most commonly-cited factor, delegates questioned the feasibility of meeting the Scottish Government’s aforementioned strategic framework given the current financial climate. Delegates claimed that a clear definition of balance between primary and acute care would significantly help. In addition, they also cited the importance of a unified IT system in reducing cost, as well as other benefits (see next section).
  •  Staff: Staff recruitment and retention was routinely mentioned as an area of improvement, especially in nursing homes, and delegates were careful to stress that the issue is chiefly about job satisfaction rather than money. The disparity in salaries of council and NHS employees warrants serious attention, and this issue will not work if the private business model is retained. I think this issue will emerge as perhaps the most important factor for delivering quality EoL care, and the junior doctors strike in England may very well bring more attention to the importance job satisfaction among medical professionals
  • Time: Health and social care professionals often have so many competing priorities that they simply do not have the capacity to do everything they need to do. Delegates thus called for a shift in attitudes, emphasising that finding time for nurturing partnerships would go a very long way. An evaluation of palliative care ‘specialists’ (as mentioned above) was likewise cited as a necessity. Finally, delegates called for a streamlining of the triage process, saying that identification and referral need to happen at the point of contact – otherwise known as lean working.

3. Lack of awareness and understanding

Delegates cited a lack of value and/or understanding around the integration of health and social care as a major impediment to the provision of good end-of-life care. This is especially problematic because health and social integration came into effect on 1 April 2016, very little change has been noticed on the ground. Delegates further stated that finance and governance issues are the major obstacles to achieving full integration.

Many policy recommendations were offered to address these issues, with the most important being to break pervasive silo mentalities in favour of what the delegates dubbed ‘colocation.’ Doctors, nurses, social workers, and other health and social care professionals need to come together to form multidisciplinary teams, to ‘learn each other’s language.’ This will help rectify issues with confidentiality, and also bridge the perceived gaps between those who work in physical and mental health.

In addition, delegates called for better record keeping via a unified IT system, and increased funds for care home work. They also called for an increased awareness of how money is actually used in clinical settings (i.e. chemotherapy, ICU, etc), and held that increased cooperation would help accomplish this. Finally, delegates repeatedly espoused the key role that third sector organisations can play in delivering end-of-life care services, and argued that full health and social care integration would not occur without fully involving these organisations.

4. The community’s role

Returning to the original theme of this piece, community empowerment and engagement were repeatedly cited throughout the day as playing an important part in this issue. In practice, however, this is much easier said than done.

I was initially surprised by the decidedly philosophical approach the delegates took. They began by first asking ‘what is a community?’ No two communities are the same, with widely varying differences in location, size, equality, capacity, cohesiveness and many other factors. They also questioned the terminology because it connotes the Conservative/Liberal Democrat coalition’s ‘big society’ ideology. In addition, communities may lack the confidence and knowledge to tackle end-of-life care issues. Even without these factors, perhaps the biggest problem was on the ground: members of the current workforce are the first to have to work, care for their children, and look after their ageing parents simultaneously.

According to delegates, the overall goal was to match a person’s needs to the resources available in the community. To these ends, delegates said that the first steps are having strong leadership and fostering compassionate communities. Another important step is education because community members are not specialists. Therefore, they need to be educated about good palliative care, bereavement and funeral details, and the many resources they have at their disposal. In addition, access to escalation plans was cited as a must for communities, so laypeople can fall back on a set of procedures to deal with end-of-life problems. While delegates realised these interventions will be difficult to implement, they are crucial steps in empowering communities to take control of this issue.


Above all, the key message emerging from this event was that there is no silver bullet for addressing EoL care. Further, the need for engagement, partnerships and cross-sector approaches was repeatedly cited by delegates as an essential step to ensuring that people enjoy what has been dubbed a ‘good death’[1].

This event represented the collaborative approach in action. I think it’s crucial that similar methods continue to be employed because these stakeholders are best-placed to elucidate how their needs could be most effectively met. As these actors are in many cases the ones directly responsible for delivering services, it is absolutely paramount that they are empowered and supported in achieving their goals.

[1] It is worth noting that assisted dying came up several times during this event. However, the discussion was quite polemical, and warrants further discussion in a separate post.